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One Moment You See, Then You Don’t

By Eleanor Lew August 21, 2014 1:19 pmAugust 21, 2014 1:19 pm

Photo

Credit Keith Negley

I was watching Diane Sawyer on the evening news, wondering how she manages year after year to look so young, when suddenly her face disappeared. Now you see. Now you don’t. One second. That’s all it took. A dense black inkblot shaped like a map of England and southern Norway suddenly blocked my view of Diane so that all I could see was her blond hair and shoulders. At first, I thought it was the television set. Changing channels didn’t bring her face back, nor did rubbing my eyes.

He drew a picture of the inside of my right eye, the affected one, and explained that my degenerative myopia, an inherited condition that is far less common than ordinary nearsightedness but still a leading cause of blindness worldwide, had caused my eyeball to elongate excessively. It looked like a house whose walls had been stretched so thin that the roof caved.

The doctor didn’t say much else, didn’t make any recommendations for physical or occupational therapy, didn’t tell me to call him if I noticed any changes. I left his office shaken. “What if it happens in my other eye? What if…?”

In the weeks that followed, I began to notice bizarre changes in my right eye. Frequent flashing lights, like a dying neon tube, sometimes flickering color or bright white light, so intense I swore I could hear them buzz. I observed my peripheral vision diminishing. England and Norway morphed into a large, bushy oak tree with a short and wide trunk. At a park, I came upon children playing. When I covered my good eye with my hand, I could see only a sliver of sky, and legs and shoes of children running in and out of the tree.

I wrote off the psychedelic changes to the “buckling” and didn’t bother to call my ophthalmologist. But I was scared and needed help.

Calling around, I found little help for the “partly sighted” until a friend told me to call Ashby Village, one of about 120 “villages” that have been established throughout the country to help seniors live independently in their own homes. That’s how I found Thelma Elkins, a 90-year-old former social worker who had just founded a support group for those losing their vision.

Thelma and the group have become my lifeline, a place where we can share notes about the newest research and talk about the anger and fears that at times overwhelm us. At the beginning, a few members didn’t see the necessity of opening up and talking about feelings. They left the group. The rest of us understood the importance of staying connected to others, of countering the isolation that declining vision brings.

Together we grieve the death of the independent life we used to live and voice the anguish of being trapped at home, no longer able to drive. One member talked about feeling outraged that his doctor didn’t have time to talk about a vitamin regimen called AREDS2 that might slow the progression of macular degeneration. Another told of the terror she felt when a hallucination of large tropical flowers popped up in front of her eyes while she was driving, a phenomenon called Charles Bonnet syndrome that is caused by the brain’s efforts to compensate for vision loss. We provide comfort when a member recalls his panic after becoming lost in a crowd in a large Greek port and not being able to remember the cruise ship’s name. What we really share is hope.

As I nonchalantly described the creeping reduction in my peripheral vision to my group, a couple of them urged me to call my doctor and get an appointment for the next day. I did. My ophthalmologist’s eyebrows lifted as he assessed the changes. He suspected wet macular degeneration, caused by abnormal blood vessel growth, was contributing to my vision problems and he called my retinologist’s office.

My first eye injection came next. The retinologist adjusted my chair until it was in a horizontal position, clamped my eyelid to keep it from blinking and then said, “Look down and to the left!” He carefully inserted a hypodermic needle full of medication into my numbed eyeball. He said I was lucky because the medication, which came on the market in 2006, stops the bleeding and vascularization.

I felt a prick and noticed a tiny floating water bubble, the medication, and then it burst in my field of vision. The world turned purple, and I felt slightly faint for a few seconds. My doctor reached out his hand to shake mine, saying, “I’ll see you again in four weeks.”

The medication is working its magic, and the old oak tree has shrunk back to its original shape of England and Norway. I have more peripheral vision. Every day when I wake up, I check to see that my good eye is still inkblot free and that England and Norway are still the same size.

I still have a hard time talking to friends about my condition because I am scared I will make them feel uncomfortable and drive them away. I read an article written by a blind woman about how people assume that she can’t possibly be intelligent. They sometimes shout at her, assuming that she’s also deaf. My support group has helped me practice sharing my story with others.

Recently, I accompanied a blind man I had met at the Oakland Lions Center for the Blind to the BART station. When my new friend and I got on the train, his white cane, signifying his blindness, prompted four people to offer their seats so fast that I could feel the wind from their movements. We took two of those vacated seats. I was happy to note the power of the white cane. If and when it is time for me to use one, I will be ready.

Eleanor Lew is a marriage and family therapist and practices in Berkeley and Emeryville, Calif.